TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Wednesday, November 11, 2009

Tyson had his routine clinic appointment at Sick Kids today. He didn't need an echocardiogram this time but just an ecg. (Echocardiogram is an ultrasound of the heart - a test that uses sound waves to create a moving picture of the heart. An ecg records electrical activity of the heart on a graph.) Tyson had nothing invasive done today or anything involving sedatvies today, thankfully!

Dr. McCrindle reported that the results of his ecg are unchanged from his last ecg in August. No change is good, it means his heart is still functioning how they expect it to after a Glen surgery. His Fontan surgery is likely to be between 18 months and 30 months of age....but this estimate changes every time we see the cardiologist so we aren't counting on anything concrete.

Tyson also saw the audiologist today to follow-up on his hearing. We are happy to report that there is nothing wrong with his hearing!! We weren't surprised at this result because we haven't really been worried about his ability to hear, and he can already speak some words.

He now weighs over 23 pounds (bigger than my other kids at this age!) and he is eating and sleeping well. He is going to be one year old next Saturday and is still not crawling, but he is soooo close! He is able to pull to a stand with great effort and is starting to cruise around furniture. Once he starts crawling we're sure he will be motoring around like everyone else his age.

Some of you have asked if his heart will be "fixed" after his third surgery. Tyson's heart will never function normally. The surgeons have just "replumbed" it the best that they can. It is completely under-developed on the right side and the surgeries have made it so that the left side now does all the work, without any help from the right side. His heart will never function like a normal heart and will always need close monitoring to make sure it is still functioning well.

For Tyson's upcoming birthday, we will be hosting a come-and-go birthday party in the church basement on Saturday, November 21, 2009 from 10am-12pm.
Please join us there for some coffee, cake and refreshments.
Brian and Mel:)

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